Diagnosed with HL in August 2023, had a huge lump on one side of my neck and night sweats for weeks, eventually got diagnosis after biopsy. started ABDV chemo within 7 days so really didn't get time to absorb anything. I am 48 years old. Never had any serious illness in my life.
I am now on 9th session, they tell me i need 12 sessions but i want to stop at 10. Midpoint PET scan showed excellent response and most of the cancer was gone, lump on neck also gone, but i continued with chemo.
Had some delays, 6 weeks due to severe lung problems possibly linked to Bleomycin so they removed Bleo, and i continued with AVD. I later had PICC line inserted due to severe arm pain from Decarbazine.
I keep asking doctor for evidence as to why i can't stop after 10 and i need 12, i only get told the "research suggests" etc. I sometimes feel i am a number on a spreadsheet and they don't see the human behind the treatment.
I feel like chemo is killing me, it's the devil, not only do i get really sick, but it makes me cry, i am going through this on my own and often feel helpless and forget why i am doing this. Sounds strange i know but chemo makes me feel so bad if they told me i was cured tomorrow i wouldn't really care anymore either way, i just want treatment to stop. I am single parent and doing this for my kid more than myself.
I used to recover somewhat from chemo, but cumulative effect now builds up, i don't recover before the next session.
I have continued to work throughout, home working only and my employer is amazing, but people don't really see the pain inside. Feel lost and don't know why i'm doing this anymore. it's hard to have something to look forward too when life has been so dark for so long now.
I would love to talk to someone who has come through HL and got life back together again. Should i do 12 sessions?, what if any difference can 2 more sessions do in respect to a cure?
Hi ABDV and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Lets look for group members who have followed the same journey to pick up on your post.
You are doing great and yes it can get hard but you are just about there……. and I can understand you questioning the final few treatments…… but if you stopped now and a few months down the road there is ‘something’ picked up would you regret stopping?
My 6 cycles of R-EPOCH had me have over 750hrs of chemo but this ‘only’ controlled the brick sized growth in my neck…..(See my story) so to have any chance of long term remission I went on to have 2 Allo (donor) Stem Cell Trabsplsnt (my first failed) and also 40 sessions of radiotherapy……. It was 2 hard years but I am 8 years out from my last treatment, turned 68 last Nov and am living a great life.
